Patrick's Condition Info Page for Friends of Patrick

Website for Friends of Patrick

Info about Patrick's Condition

As of Friday March 24, 10:00 AM:
We are very sad to report that this will be our final update to the web site. This is because Patrick passed away at 9:45 AM, today, March 24 in the Adult Medical ICU Unit at New York Presbyterian Hospital.

He improved steadily for 4 days after his successful emergency surgery on March 15 but on Monday of this week, infection continued to challenge his body and he again went in for emergency surgery on Monday, March 20. His condition deteriorated from that point due to a generalized blood infection and kidney failure. He fought right up to the time of his passing. He was aware of our presence all week as we prayed with him and read to him and made him as comfortable as possible with the assistance of the doctors and nurses. Our family was with him to the end and he was very peaceful. He is now in Heaven with our Lord Jesus, in no pain and very peaceful.

Patrick's life, personality, love of God, and how he lived his life is and will continue to be an inspiration to all. We will miss him every day of our lives and our lives have been immeasurably enriched by his. God Bless him and keep him until we see him again.

We also could not have possibly made it through these past 5 months without the support of our wonderful family and friends. To you all, we are forever indebted. God Bless you all as well.

Funeral Arrangements:

Barrett Funeral Home,
148 Dean Drive,Tenafly NJ
201-568-8043/8048
Saturday-7-9PM,Sunday-2-4,7-9PM

Funeral Mass:

Monday, 9:30 AM
St.Therese of Lisieux Roman Catholic Church
120 Monroe Ave.
Cresskill, N.J.

Internment

George Washington Memorial Park
Paramus Rd.
Paramus, N.J.

Love, Marianne, Norm, Daniel and Kelly

As of Saturday March 18, 1:00 PM:
Needless to say, we are eternally grateful for the prayers and support that he and we continue to receive from all of you and people we don't even know. We obviously also continue to be amazed and inspired by Patrick. He has a long recovery period but God will continue to see us all through these challenges.

We have not spoken much at all about Kelly and Daniel on this web but it is long overdue for us to do that. They have been incredible throughout Patrick's illness. They have been a wonderful brother and sister to him and there is no doubt when they walk in his room, his heart jumps for joy and his spirits improve. They have been shortchanged for our time all too frequently and have unbelievably understood. They have kept their schoolwork and activities going under incredible circumstances and continue to inspire us as Patrick does. Mare or I have fortunately been able to make most of their activities including Kelly's basketball games and Dan's Junior Ring Ceremony. Dan has been indispensable in so many respects such as with last minute requests to pickup Kelly from school when Dad or Mom was tied up at work or at the hospital. But, most of all, they supply us with their unconditional love and smiles when we most need it. We thank God for blessing us with such wonderful children.

And, we thank you all for your continuing support, caring and love for the Nilsen Family.

Love, Marianne and Norm

As of Wednesday March 15, 11:00 PM:
On Wednesday, a CAT Scan was performed and it was determined that he had ruptured either his stomach or intestines (possibly due to extended use of steroids due to his kidney transplant or in fighting off viral encephalitis although noone knows for sure as has often been the case). There was the option of hoping the hole would heal itself over time as is sometimes the case or perform surgery which was very high risk. Neither option had a high probability of success. We opted for the emergency surgery to give Patrick his best chance and discussed it with him and family members. We all prayed. To our continued amazement, Patrick came through the surgery successfully and with flying colors, amazing the doctors as well. The surgeons repaired the hole in the intestine and he is recovering, improving each day.!

As of Monday March 13, 11:00 PM:
After returning to Bergen Regional Rehab. Center on 3/10 after successful parathyroid surgery and fighting off a bacteria, Patrick 's abdomen began to increase visibly in size. Marianne and the doctors tried to diagnose the problem through Monday afternoon, and late that afternoon, his blood pressure and blood oxygen reduced significantly such that he needed to be transferred immediately to ICU at Bergen Regional. After much effort by doctors and nurses, many phone calls for help from other doctors and hospitals, and much prayer, his blood pressure was stabilized enough to transfer him to New York Presbyterian Hospital's Adult Medical ICU Unit late Monday nite. His kidney had also shutdown and during the next 36 hours, all attempts were made to stabilize him, treat him for some unknown infections, and diagnose the problem.

As of Friday March 10, 4:00 PM:
Patrick returned to Bergen Regional Medical Center. He continues to recover from this week's surgery.

As of Tuesday March 7, 4:00 PM:
Although we expected to maybe leave New York Presbyterian on Sunday, that did not happen. Patrick developed a urinary tract infection on that day for which they started him on broad base antibiotics while they grew cultures. Yesterday, the surgeon said he might go home Wednesday, but today, the cultures identified that the cause of the infection is a very serious bacteria. Apparently, infection from bacteria is becoming a bigger and bigger problem in hospitals. They changed to another medicine while they did additional testing to even determine if the new medicine would adequately attack this bacteria. Finally, at 7 PM tonite, we were notified that this med is in fact able to attack this bacteria but it is a somewhat new med. He will be on it for at least 3 days at which time a new culture will be done to see if it is gone, and if not, more med and obviously monitor him closely throughout. He is awake and alert about 40% of the time. Please continue your prayers!!

Love, Mare and Norm

As of Saturday March 4, 4:00 PM:
Patrick had his surgery Friday to remove the enlarged parathyroid glands which have been causing his calcium and parathyroid hormone levels to be above normal. Dr. Thomas Fahey, Chief of Endocrine Surgery at the Cornell Weill Medical Center(New York Presbyterian Hospital on 68th St. in NYC) did the surgery . He removed 3 1/2 of the 4 glands leaving 1/2 of a gland which is what we need to live. He said the surgery went very well - about 3 hours. They will monitor him and his calcium levels for the next 2 days and hopefully he will be transferred back to Bergen Regional Suday(set up tentatively for 12:30) of Monday. Patrick was wide awake when we saw him after surgery and looked great-even after 3 - 3 1/2 hours of surgery. He is unbelievable. Kelly , Dan, and Grandma all saw him right after also and they commented "awesome." We were all very worried about this surgery for a number of reasons including its close proximity to the tracheotomy, but with all of your support and prayers, and God guiding the hands of an outstanding surgeon, we are very thankful it went well. A number of people commented that he is considered one of the best in hospital, which is in itself cosidered the best in NYC. It has been a very new experience for us being in the adult ICU unit which is also a "closed unit" with very much different rules even from Peds ICU 4 floors above .

In addition, we are ecstatic to report that on Thursday, for the first time, Patrick began overiding the ventilator and doing some BREATHING ON HIS OWN!!! Prayers really do move mountains. Thank you all so much for all of them. Just now, Mare called to tell me he is now frequently talking with short responses even with the tracheotomy inflated- not sure how he is doing that because there is a balloon preventing air flow by the vocal cords normally but he obviously has alot to say! I am going to the hospital shortly so Mare can go home and can't wait. Yesterday, for the first time, he gave me a kiss when he saw how ecstatic I was for his breathing. I was on cloud 9.

Again , thank you all for the prayers and support!!"
Norm

As of Thursday March 2, 9:00 PM:
Patrick is scheduled for surgery on Friday at 10:30 am. Visiting hours are much stricter than in the past, from 11:00 am - 8:00 PM only. Please do not call the hospital, we will get a phone chain going or feel free to e-mail Marianne at nilsen5@verizon.net or Tommy at tcracing66@hotmail.com

As of Wednesday March 1, 9:00 PM:
Patrick arrived safe and sound into NYC. He is in Surgical ICU for now with one on one nurse service.
Visiting hours are much sticker than in the past, from 11 - 8 only. Please do not call the hospital, we will get a phone chain going or feel free to e-mail Marianne at nilsen5@verizon.net.

As of Wednesday February 22, 3:00 PM:
"We received a call from New York Presbyterian Hospital (68th St.) on Tuesday,2/21 that the surgery for correction of his parathyroid gland problem which is causing his calcium to be above normal and affects his mental state, will be the week of 2/27 and we will be transferred there this Sunday,2/26. Don't have the exact date of the surgery yet.

He sucked from a straw for the first time yesterday. He struggles with frustration in not being able to communicate clearly but can read words and talk in sentences when he wants to.The Speech Therapist, Denise is fantastic! Nursing and respiratory care also continue to be outstanding along with the doctors and the other therapists.

Today, the hospital held a periodic review meeting of Patrick's progress with us. It was run by the Vice President in charge and had all major disciplines present- about 15 people . We knew most of what was said but learned that on the national Speech Therapist(COMA Scale) Rating Scale(1-10), Patrick started at a 1 and is now a 5 and sometimes gets up to a 7. We had not heard the rating since he made 4 and so were very happy. What was so incredible about the meeting was that here we had that many people gathered in a rehab center of 550 beds, to talk about Patrick and his progress and what everyone is thinking and where we go from here. There was an incredible level of genuine commitment and support expressed by all present(which we have seen daily at the center) starting with the VP . He assured us they would continue to be there every step of the way with Patrick and us, would continue to hold frequent reviews, that we would still have a bed waiting for us when we return from surgery instead of being under the 10 day clock we were under in January,and that he had read this website (which Marianne's brother and my brother in law,Tommy, so graciously started and maintains), read up on Prune Belly Syndrome (the condition Patrick was born with which entails varying degrees of kidney and urological problems and essentially no abdominal muscles ) , and in general got himself educated more on Patrick's history so as to better oversee his care. He encouraged us to ask questions which we were not shy to do and agreed to take action for things we brought up. He asked us if we were satisfied with their performance and the future plans and we said we were. Marianne and I expressed our deep gratitude to all for his outstanding care and progress and we left the meeting with a continued wonderful feeling of confidence of being supported 100%. Daniel and I met him in the lobby later and he introduced himself to Dan. We explained all this to Patrick as we do all things .

Tonight, Patrick had some more speech therapy, and he and I watched some of the Olympics and last nite's David Letterman (one of his favorites)Marianne went to the movies with Kelly and Dan and their friends since they are off from school this week. .All in all, a very good day.

Again, Patrick looks forward to continued visits from friends and family . Thank you all for your continued prayers and support!"

As of Sunday February 20, 3:00 PM:
Patrick is continuing to improve everyday in alertness and responsiveness. He looks great. He
communicates by head shakes , eye movements, and eyebrow movements and talks when the Speech Therapist deflates his tracheotomy. Patrick continues to get all his therapies and is improving everyday.
He sits in the wheelchair daily for 2-3 hours.

Patrick presently has a urinary tract infection for which he is on an antibiotic. We are still waiting for a
surgery date for the parathyroid surgery to be done in New York. He had a surgical procedure on
Friday,2/17 in the hospital end of Bergen Regional to put a porto catheter in and was under anesthesia
and tolerated it well. We received an excellent report from the new neurologist on the case on the
results of the brain EEG just completed . He requests and looks forward to friends continuing to visit .
He continues to follow all sports closely . We are very grateful for his continued progress and ask for continued prayers as we continue his road to recovery.

As of Sunday January 30, 3:00 PM:
HEAR ye Hear ye!!
He is back!!!!!!!! He really does talk!
When we deflate the cuff around the trach the air goes up to the throat and he starts talking
told Grandma her name and he missed Her !!!!!!
Told me is going to a Yankee Mets game with Mr.Detura and that Tommy, Breda and Lori were
there the other night!!!!!!!
Wish we could have it deflated all the time but will try to do it two times a day. He looks great!! still
out on calcium but it is holding his own and he is now off three more meds and b/p is lower
He is in the chair two and a half hours a day every day!!!!!

As of Monday January 23rd, 11:00 PM:
Extra Extra Read All About It

"It is 11 PM on Monday,January 23 and we experienced an absolutely wonderful
happening tonight!!! PATRICK SPOKE FOR THE FIRST TIME IN 3 MONTHS!!!!!!!!!!The
Speech Therapist and Respiratory Therapist together tonight deflated his
tracheotomy "ball" to allow air to pass by his vocal cords (this was done once
before on 12/22). Normally, due to the tracheotomy, he can't talk even if he is
able. For the next 10-15 minutes , after some initial groans, he began talking
in single words in response to various questions . Norm was there but Mare had
gone home. Norm immediately called Mare and put the phone to his ear while Kelly
and Mom listened and spoke to him. He said"I want to get out of here." Needless
to say, we have been on cloud 99. Mare couldn't take it at home so immediately
drove back to the Rehab. Center . Some phone calls were made and we had just
witnessed our greatest milestone yet in Patrick's recovery and our own
continuing miracle. Thank you all for your prayers!They move mountains. Patrick
also looked great today !! He also sat up in his chair for 2 hours. We are
still working with various doctors to schedule the needed parathyroid surgery
which has been complicated because he will now he handled by Adult doctors .
But, what a wonderful day! More tomorrow. "

As of Saturday January 20, 3:00 PM:
Patrick has been on medicines over this past week as in the prior update to bring his calcium down and delay the surgery but we have had limited success. He now needs the surgery expeditiously to remove the enlarged parathyroid gland (most of us have 4 of them in our neck-a test showed one was enlarged but they couldn't see them all with ultrasound and will need to do either a cat scan or nuclear medicine test to get the whole picture before surgery. It is causing the calcium to be high which adversely affects mental state and must be corrected)
We have spoken to the endocrine surgeon at New York Presbyterian who saw him last week and he is trying to clear his schedule . We await the phone call to go. In the meantime, Patrick continues to get occupational, speech, and therapeutic therapy and range of motion therapy as well as a once a week massage
therapy he got yesterday as well as excellent nursing care. He is very alert much of the time and is making progress and fortunately didn't lose too much during his 6 previous days in the hospital.He continues to have visitors for which we are grateful We thank God for his continued progress. We therefore, hope to get the surgery done over this next week, and get back to Bergen Regional but must do so in 10 days or we lose the room and must start over again to locate another rehab center. Please pray for a successful surgery and return
to Bergen.

Today marks 3 months since Patrick first had symptoms of a problem and he went to a doctor. We would like to say Thank You so much to all of our friends and family who have supported us during these difficult times. From the delicious meals ,hospital visits, errands, the phone calls and cards of support, gifts and donations, prayers, and other ways people have supported us , we are forever thankful for it all and feel very blessed to have you all. We thank God for Patrick's progress so far and we ask for your continued support and prayers as we work to continue Patrick's recovery to full health.

Love,Marianne and Norm

As of Monday January 16, 3:00 PM:
Patrick's progress has slowed a bit due to medical issues . His calcium has been high since the beginning of '06 and treatment for it has resulted in his electrolytes being somewhat out of balance. On Jan. 6, his parathyroid hormone analysis was high indicating a problem with the parathyroid gland possibly requiring surgery. Doctors at Bergen Regional recommended he be transferred to an ICU where the doctors know him best for evaluation and treatment for this problem and so we transferred back to New York Presbyterian on that day. We were there until Jan. 12.During the time there , it was determined that at least one of the 4 glands is enlarged and needs to be removed but since it was not an emergency, and an experimental medicine is available for this condition, and to allow the surgery to be done under better conditions(without the tracheotomy), we were discharged and returned to Bergen Regional Medical Center. The doctors here are now trying to manage the condition while we continue to get Patrick the Occupational, Speech, Range of Motion, and Recreational Therapy that has been working and get him caught up from lost therapy time. In addition, we will be having some reevaluation done for example for Physical Therapy. We also have a new Pulmonologist and Neurologist to manage Patrick's recovery .

Today (Monday) he had a chest x-ray , two sets of blood work, was almost transferred again to an ICU. Prayer of the week is that Kelly and Daniel pass their exams and that the medication works. We have seven days max to have it work. If it doesn't click in by then we are on our way back to Cornell. We will go in as an adult patient with new doctors, a new surgeon , a new pulmonologist and a new kidney doctor.

As of Saturday December 24, 3:00 PM:
Merry Christmas , Happy Holidays and Happy New Year to All!!!!l

Patrick is doing great, he has surpassed any milestone that the therapist has set for him. He is knocking their socks off!!! Patrick will get his voice back, his vocal cords are working- did a dry run on Thursday! Still on the ventilator and respirator but is starting to cough, a first step. Then arms and legs get movement. Keep praying we have a few more inches to go!!!!!!!!!!

Can communicate with shaking his head and eyes!!!!!!!!!

Love you all
The Happy Nilsens

As of Wednesday December 14, 3:00 PM:
Patrick has sound, hearing, vision, smell and is moving his mouth. Healing goes from top down, he has some neck movement, so next is the chest, lungs, arms and legs. They all are so close together that when you get one you get them all. It could soon be a dramatic jump so keep praying. Patrick is actually watching television again really for the first time since we moved New Jersey. Norm is trying to get cable upgraded to MSG and ESPN and then we are in gravy. He has been watching Raymond videos today. His neck muscles are getting looser.

Marianne back to work but Norm is off. Next week we both need work and then Marianne has a week off
Thanks for all your support

Love
The Nilsens

As of Tuesday December 6, 3:00 PM:
Patrick had a good day which means mommy had a good day!!!!! He is now following objects with his eyes. He searches the room for Kelly's voice when he hears her and is out of his sight. The speech therapist came again today and says he has good reflex responses in his mouth. She showed me how to position him so that he starts using his trunk muscles. It worked by himself for about 45 minutes and then he tipped over!!!!!! Patrick needs to get his shoulders and trunk muscles working for eating, talking, to cough
and to get off the respirator.
Patrick has a long road but the therapist thought he improved since Friday. She also showed me how to support his head to stretch and strengthen his muscles. Patrick now has TV and a dvd player so we are looking for baseball, football and basketball dvds since these are the only things that really interest him. I played Grease this morning while I was doing his pedicure. I also brought in his CD's so we listen to Elton John and country. Tomorrow it's Everyone Loves Raymond dvd's and I just remember he got a Yankee one for his birthday !!!!!!!!!!
We would like to have someone there with him for company and stimulation so we are looking for visitors. Any one like Monday Night Football?
When I go back to work he will be alone from 10 - 3 . If anyone is available the week of December 19-21 ( I know it is Christmas week.) Dan is off on Thursday and Friday during that week. Then again more daytime visitors during the first week of January.

Keep the prayers going!!

Marianne and Norm

As of Sunday December 4, 3:00 PM:
I just discovered it was the second Sunday in Advent!! I realize I am in a time warp.

Patrick was transferred from NY Hospital on Thursday evening and arrived at Bergen Regional Medical Center at 7 PM He is on the third floor of building Six, Room 324 on the ventilator floor. He has a single room. The nursing care is excellent. There is a respiratory therapist on the floor at all times in addition to the nursing staff. The head nurse is excellent. We have been meeting our new doctors one by one. They are adult doctors so we are entering into a new world. So far so good.
Patrick has a urinary tract infection because I forgot to tell them that he needed to be on maintenca antibiotics like he has been his whole life. When he is on other antibiotics it gets discontinued and we forgot to restart it.

Visiting hours are from 8 to 8 but so far they haven't thrown us out since we are in a private room. Visitors are welcome. Patrick has been sleepy the last two days due to the infection but had had great days on Tuesday and Wednesday before the transfer. Bergen Regional Medical Center is also so much quieter that he is catching up on his sleep after five weeks of noisy ICU. The speech therapist came in yesterday and Patrick will have it every day. The therapist will show us what to do in between visits as a extra practice.

Patrick needs to strengthen his neck muscles before he will be able to eat by mouth. Physical therapy comes in twice a day. I will be there this week Dec 5-9 and then Norm will take off and be there 1-19 so I can go back to work. My sick time has run out. I am not sure we can afford it but at least we have four more weeks to decide. I will fix the house phone message unit soon. Sorry for the inconvenience. Keep the prayers going!!

Marianne

As of Saturday November 25, 3:00 PM:
It has been 35 days. Patrick's body is getting stronger. He is now able to move his tongue continually so we are hoping to be able to start soft foods to see if he can swallow. Recently he had another infection so he is on another course of antibiotics. Sleeping for Patrick has been very hard to do in a noisy ICU but yesterday he slept for four hours in the afternoon very deeply. We have discovered his favorite position!!!!!

He is suppose to be transferred on Monday or Tuesday. We have visited five centers, one in Westchester, Manhattan, Roosevelt Island, Wayne and Bergen Regional in Paramus. They are all good. The floors that have the trache and vent patients are specialty floors. The staffs seem dedicated and caring. Until he is off the vent the choices of centers are very limited. Once Patrick gets off the ventilator then we can transfer him somewhere else.

The doctor in charge of the unit is a Pulmonologist from Valley Hospital. The nurse from Dr. Cornell's office says it is a good unit. Right now the most important thing will be proximity. What will get Patrick out of this is us being there and friends being there often and giving him constant stimulation and exercise. I will write again next week once there is a phone number and with info on the best times to visit. Visiting hours are 8-8 but some times are better for those that don't want to be involved in his daily care and routine.

Thanks for all your love Patrick, Marianne, Norm, Kelly and Daniel

As of Sunday November 20, 9:00 PM:
It has been 28 days. Most of the tubes are out. The trach works well and it makes turning him easier. If the ventilator pops off it is easier to put back on. Patrick is gaining nutrition through the feeding tube and his body seems healthier. Patrick is getting more sleep at night now that they don't have to do much. He is moving his tongue more controlled now.

We are waiting news on a rehab center. We don't get to pick a center but are bound to which ever one has a open bed first. There is a rehab center in Bergen Regional. What we have learned is that each center is unique and these floors are special with dedicated people working there.

Don't know where we will be for Thanksgiving. We all miss him so much!!!!

It is very hard being home seeing all of his things. Thanks for your prayers.

Marianne and Norm

As of Monday November 14, 9:00 PM:
Patrick had a good day today and the procedure to add the feeding tube went very well.

As of Sunday November 13, 2:45 PM:
For all those that have had skimpy details here is the short version of the last three weeks Patrick was
admitted to Valley Hospital with viral encephalitis cause still unknown. He was transferred to Carnal Medical center after three days . Today was his 22nd day.

For most of these three weeks he has been fighting to stay alive. We have not heard his voice in three long weeks. He is on a respirator and has a tracheotomy. Tomorrow he is scheduled for a procedure for a feeding tube to get the tubes out of his nose. He started swallowing again spontaneously and is now biting the suction tube for the first time. His kidney function is stable. The feeding tube will allow him to gain strength also the tubes in the nose are creating too much mucus which trips the vent. He is still on oxygen but only 30% and room air is 21%. He is finally fever free and antibiotic free.

He is very weak after 17 sleepless days. After mom's tantrum we got three free days of sleep. We stopped
the eye drops today ( which were started when his eyes were open for 24 hours straight) and so maybe they won't stick together and they will be easier to open. His most alert moments are in the morning. It is a miracle he is still alive. He has been anointed at least three times.

He can not move his arms or legs at this point. He is scheduled for another MRI later this week. He stopped breathing after the last one so we are waiting until he is stable from the trach ( last Tues.) and the feeding tube before we do that. It will tell more information about the brain swelling. The neurologist are hopefully and will know more after the MRI.

The care is great and it makes me proud to say I am a nurse. Norm and I will be looking into rehab centers this week. Because he is on a trach it drastically limits were he can go and since he is now 20 he is classified as an adult so all the centers they usually recommend are for children. I will start Wednesday working with the pulmonary doctor to see if we can work to getting him off the trach. Norm is trying to go back to work half days but will only make it 3 days this week. We are all scared and lonely and miss him so much. After this, updates will be shorter and as frequent as possible. I will probably no longer stay nights at the hospital because Kelly and Daniel are needing me home more. Not sure about Norm yet.

Prayers are always wonderful. He has always been a child of God, now he is being carried by Him .
Love Mare, Norm and Family

Please note this information will be changed when there is something new to report. For any questions please e-mail Marianne by clicking on the following
link nilsen5@verizon.net.

Thank you for all of your help and support during this time. We have learned over the years that it is indeed true that it takes a village to raise a child and no time is that more true than when physical health is challenged.

Thank you for being part of our village!
Marianne & Norm

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